by maxs mom » Tue Dec 30, 2003 10:28 am
Bhanu,
I am so sorry to hear about your loss. I too suffered severe PE early in my pregancy and delivered my son at 25 weeks on 1/20/03. I think I started showing physical signs of PE (swelling) at about 23.5 weeks. Like your baby, my son was IUGR weighing 534 grams (1 lb 3 oz). When he was born, they told me he weighed one pound, my heart sank. I made them double check and they corrected themselves and added the 3 ozs. The nurses said size doesn't matter, but boy, those 3 ozs. made a world of difference to me. Thankfully, after 15.5 weeks in the NICU, our son Max came home and he has been doing well ever since. He is still small, just 15+ lbs and his 1st birthday is just around the corner. But after all he went through in the NICU, it barely matters. He does have some problems, but nothing that doesn't seem like it can't be corrected later (e.g. slight developmental delay, heart murmur, slight near sightedness, etc.) He had a rough go in the NICU, having had 3 staph infections which was actually diagnosed as endocriditis (infection on the pulmonary valve in heart) toward the end of his stay so he had to take 4 weeks of antibiotics before he came home. The infections were probably the scariest times for us. He got so sick, but bounced backed. He was intubated for 10 weeks and came home on oxygen, (he's been off of it for awhile) He does have a lung condition known as Chronic Lung Disease, but as he gets older his lungs will generate new tissue and he will have healthy lungs someday (in the mean while we do everything to insure he doesn't get sick) I guess I am telling you all of this because I know there is hope. Max had a rough time, but he pulled through (and I saw a few other 24 & 25 weekers make it) and it can be wonderful.
Despite everything we went through, I am determined to have another baby. My plan is to start in the summer (I had a classic c-section, so my Peri (high risk OB) wants me to wait 18 months) And while I am a little scared, because I know there is no cure for pre-e I also feel empowered. I know I am going to get the best medical care this time around, and be monitored very closely for pre-e. I will abolutely do anything to carry the 2nd baby to FT, even bed rest for 15 weeks!
To answer your question, my HCG and AFP were normal. One sign though was that at our 21 week ultrasound, my OB/gyn at the time was surprised that Max was so small. At the 8 week US he was normal size. My Peri told me this could be a definite sign there is a problem, and unfortunatley, my regular OB/Gyn didn't think twice about it. Actually, they made a few mistakes managing my care that I feel ultimately made me deliver so early. Sure, I know with the case I had, I would have never made it to term, but had it been managed better I am confident I could have lasted another 2-3 weeks before my body failed. I never developed HELLP, but it was literally right around the corner at delivery time. That is why the Peri delivered Max in an emergency. By the way, I was transferred to the peri's care when my regular OB/GYN finally figured out I had signs of pre-e. So, I know even if I get pre-e next time, I am confident it will be caught early and I will get the best treatment possible this time around and any lenghth of time added to a pregnancy is a plus.
My suggestions for you are:
#1- Get a Perinatologist. If your insurance won't cover it without a referral, hound your regular OB/Gyn until they give you one. You need to have blood screening done to make sure there isn't a underlying condition making you predisposed to pre-e (e.g. lupus, etc) I had the blood taken today, they took 13 vials! If there is something wrong, they will treat that, which will mean there may have been a reason I got pre-e, and may be prevented next time around. Don't let your OB/Gyn make you feel like he can cover everything you need when you get pregnant next. As great as they may be, they just don't have the same knowledge or tools a Peri has. Also, since you had pre-e so early, you have every right to see a Peri.
#2- Don't beat yourself up! As hard as it might be, you did everything you could. My philosophy on what happened to me was this. I blame myself for not being quicker and more persistent in getting help from my OB/Gyn when I started to feel like something was wrong. But I also forgive myself because I know I can't change what has happened and making myself feel worse isn't healthy. I know your pain is so fresh, and it seems so hard to put what has happened behind you. But with time the pain will get better. If you like to read, get the book "When Bad Things Happen to Good People" I felt it helpful.
Please know my prayers are with you. If you ever need to talk, feel free to email me direct.
Kara
Mom to Max, 25 weeker, 1/20/03
Bhanu,
I am so sorry to hear about your loss. I too suffered severe PE early in my pregancy and delivered my son at 25 weeks on 1/20/03. I think I started showing physical signs of PE (swelling) at about 23.5 weeks. Like your baby, my son was IUGR weighing 534 grams (1 lb 3 oz). When he was born, they told me he weighed one pound, my heart sank. I made them double check and they corrected themselves and added the 3 ozs. The nurses said size doesn't matter, but boy, those 3 ozs. made a world of difference to me. Thankfully, after 15.5 weeks in the NICU, our son Max came home and he has been doing well ever since. He is still small, just 15+ lbs and his 1st birthday is just around the corner. But after all he went through in the NICU, it barely matters. He does have some problems, but nothing that doesn't seem like it can't be corrected later (e.g. slight developmental delay, heart murmur, slight near sightedness, etc.) He had a rough go in the NICU, having had 3 staph infections which was actually diagnosed as endocriditis (infection on the pulmonary valve in heart) toward the end of his stay so he had to take 4 weeks of antibiotics before he came home. The infections were probably the scariest times for us. He got so sick, but bounced backed. He was intubated for 10 weeks and came home on oxygen, (he's been off of it for awhile) He does have a lung condition known as Chronic Lung Disease, but as he gets older his lungs will generate new tissue and he will have healthy lungs someday (in the mean while we do everything to insure he doesn't get sick) I guess I am telling you all of this because I know there is hope. Max had a rough time, but he pulled through (and I saw a few other 24 & 25 weekers make it) and it can be wonderful.
Despite everything we went through, I am determined to have another baby. My plan is to start in the summer (I had a classic c-section, so my Peri (high risk OB) wants me to wait 18 months) And while I am a little scared, because I know there is no cure for pre-e I also feel empowered. I know I am going to get the best medical care this time around, and be monitored very closely for pre-e. I will abolutely do anything to carry the 2nd baby to FT, even bed rest for 15 weeks!
To answer your question, my HCG and AFP were normal. One sign though was that at our 21 week ultrasound, my OB/gyn at the time was surprised that Max was so small. At the 8 week US he was normal size. My Peri told me this could be a definite sign there is a problem, and unfortunatley, my regular OB/Gyn didn't think twice about it. Actually, they made a few mistakes managing my care that I feel ultimately made me deliver so early. Sure, I know with the case I had, I would have never made it to term, but had it been managed better I am confident I could have lasted another 2-3 weeks before my body failed. I never developed HELLP, but it was literally right around the corner at delivery time. That is why the Peri delivered Max in an emergency. By the way, I was transferred to the peri's care when my regular OB/GYN finally figured out I had signs of pre-e. So, I know even if I get pre-e next time, I am confident it will be caught early and I will get the best treatment possible this time around and any lenghth of time added to a pregnancy is a plus.
My suggestions for you are:
#1- Get a Perinatologist. If your insurance won't cover it without a referral, hound your regular OB/Gyn until they give you one. You need to have blood screening done to make sure there isn't a underlying condition making you predisposed to pre-e (e.g. lupus, etc) I had the blood taken today, they took 13 vials! If there is something wrong, they will treat that, which will mean there may have been a reason I got pre-e, and may be prevented next time around. Don't let your OB/Gyn make you feel like he can cover everything you need when you get pregnant next. As great as they may be, they just don't have the same knowledge or tools a Peri has. Also, since you had pre-e so early, you have every right to see a Peri.
#2- Don't beat yourself up! As hard as it might be, you did everything you could. My philosophy on what happened to me was this. I blame myself for not being quicker and more persistent in getting help from my OB/Gyn when I started to feel like something was wrong. But I also forgive myself because I know I can't change what has happened and making myself feel worse isn't healthy. I know your pain is so fresh, and it seems so hard to put what has happened behind you. But with time the pain will get better. If you like to read, get the book "When Bad Things Happen to Good People" I felt it helpful.
Please know my prayers are with you. If you ever need to talk, feel free to email me direct.
Kara
Mom to Max, 25 weeker, 1/20/03
