I guess i posted on the wrong page..i too, was glad to see some of the posts here.. thanks to the insight of others who have been there and done that..so to speak.
I just spend a 2 1/2 month ordeal with my baby born surprisingly NOT because my preeclampsia spiraled out of control as i had thought would be the case. 48 hours after my 3rd weekly NST (32 weeks)-the nurse ordered an ultrasound due to the mult episodes of his heart. There was discovered 2 more issues to add to the mild preeclampsia i had going on..too much amnio fluid adn his heart chambers were abnormal and enlarged. I was sent home to FOLLOW UP 4+ days later. unfortunately we never made it because I went back 48 hrs later -as i didnt feel him moving. come to find out he was in great danger. he put about 3 pounds of fluid on from the time i left - until the time i came back. we were sent via helicopter to deliver. he had HYDROPS, and they NEVER found a reason for this happening to him.
they gave us basically a "we are not expecting him to make the delivery - if he does he only has a 10 % chance of survival". Amazingly although he spent 3 weeks on a vent, 2 chest tubes, navel lines, multiple ivs for meds etc. he was in a medically induced coma for so long, it took 3 weeks for me to hear his first cry- in which it was so faint and so hoarse. then a month to actually get to hold him, and of course little by little he pulled through.
we are home on an apnea monitor and heart monitor, and i find all the same things happening to me. i thought when i got home it would subside but i feel it has made me worse.
i was in such a fog healing from my c section in which i never gave myself any rest to do so. i had my son on the next floor with an appendix surgery due to it rupturing just 6 days after my traumatic delivery. i am extra jumpy and alert inspite my total lack of sleep and complete exhaustion. i am so exhausted but can not sleep as i am so afraid of all the thing si feared in our 2 1/2 month stay in the NICU. i fear he will die, or the machine will beep and i wont be able to revive him. i hear the helicopter in my head even though i am not there anymore. i am so afraid i will drop him or hurt him because i feel he is so fragile. (and he is my 4th and last baby!)i know i went through alot and i suppose i need time, but while it seems everyone has "moved forward" and are so happy and thrilled he is doing well, (of course i am so thankful and thrilled he survived adn home)..i am stuck in the last few months in which i was so sure once i saw the light at the end of the tunnel with his long road of recovering from being on deaths door- that i too, could really move forward.
i cry alot when i hold him- happy tears -of course but thinking that if i had not gone in the day i did he would not be here. they were pretty certain he was not going to make it the day we delivered. i cry thinking of all the suffering he went through and i just wish that i could erase certain things from my mind. especially the nightmares i have of being on a cold steel table in the OR to have a room full of doctors -who are not doctors- trying to kill me and my baby. somehow in my dream , even though i am medicated and of course paralized from the chest down for the c section- i manage to throw myself on the floor. but of course i can not get away, so they put me back on the table and i act so kind and courteous and thank them for "helping " me back up because i dont want them to know that "i know" they are going to kill me and the baby. SO STRANGE, and i have this one all the time. i think because i have 1 photo of him out of my belly , cord had not yet been cut and blood of course is in the pic and i just see him there with 3 sets of arms tending to him.
sorry to get so in depth, and sorry for TMI but i am just not sure what everyone in this situation like myself have done besides talking (i too, dont want to take any meds) but i cant even think of returning to work any time soon. i hate to get in the shower for 15 min and leave him afraid something will happen. the beeps on the machine make me jump, the thoughts of our life in the nicu are still so fresh and so vivid that i can not even think about how i could emotionally handle working and focusing etc. and then of course the physical exhaustion ifeel. i am so tired and can not sleep . i take "cat naps " from 30,60, maybe a 90 min nap from 3am to 8am. the rest of the day i am up. i almost rad a few red lights driving and am now not driving- i get so off into my NICU world i can not focus. i seriously thought i am not safe to drive. i am so afraid of even the future for him as we were told everything is normal , all his organs and brain and such, but while that is so reassuring i wonder if everything down the road will be ok. i fear so many things and i am just saddened by how much this poor little baby had to endure.
i also have a 2 year old who adores her new baby brother and i spend lots of time occupied with her and not all my thoughts. but , i am not sure what to do and of course going to talk to someone i feel worried they may feel i am a crazy person and certainly could not be good enough to handle that type of emotional stress and be a "tentative" mommy. funny because i feel so hyper and perky due to the monitor and the fact that i feel worried about him all the time. so i am sort of scared to go and "talk" to someone about all the crazy dreams and fears. i am not depressed and withdrawn, thankfully, i am just so worried and replay the last 2 1/2 months over and over as if it were in the now. i try not to look at the pictures but do, and i wonder if he was in pain in my belly before his delivery etc. it makes me so sad.
then i also want to know how this happened and understand some of the things i read in my records. such as my placenta was (at 32 wks)690 grams when a normal one at full term is only 1 pound wich i beleive is 470 grams . the baby was 32 weeks but measured at 36 due to the fluid. there was no end diastolic flow, they did write "prob pe/ascites" (i think i started to fill up myself from him and of course fluid) i read a large placenta can link to hydrops and preeclampsia and wonder besides the "mirror syndrome " i read, since there was "nothing wrong " with the baby (no congenital problems no heart problems, etc etc and not imune hydrops which is due to rH blood type) so i am also trying to understand what happened to me.!!
my baby of course had a 2/8 on BPP just before delivery and i read teh 2 was given for my amnio fluid, he was pretty much just floating around in there. not breathing and not moving. they intubated him and of course chest compressions in the OR and i am in awe how strong he obviously is. I jsut feel maybe know ing what exactly happened to ME would also help??
i am sorry to ramble on, but dont know what seems to be a good solution and i know we are all different, jsut ike with the awful pre e..same disease but different women..if this truly is PTSD and reading other posts i think perhaps i may fall into that category, i am so confused on what to do. do i let it run its course for how ever long it takes. or try and get some help with perhaps talking to a counselor?
then naturally i worry about work. i am on my maternity leave in which i spend 10 out of my 12 weeks there in the NICU and certainly am in no shape physically or emotionally to return. i originally thought i would extend it anyway, as i was worried i would deliver due to pre e- and of course this ended up being far worse case scenario so ...here i am just wondering what to do .
anyone know if there are some places to contact for parents of nicu/traumatic delivery? just searching for ideas and of course help . this is so much more than i could have ever imagined.
thanks for listening and sorry if you made it to here and are ready to go to sleep (sorry to ramble)i will keep all in thoughts, sure is a relief to know i am not crazy and this actually makes me feel if i didnt go through this, then i really should worry. how could anyone not be effected but such tradgedy.
Originally posted by vivsmommy
Hello all, I am a newbie. I am so happy I found this site. I have NEVER spoken to anyone about the terrible sadness I experience over my experience with Preelampsia and having to see my daughter in the N.I.C.U. My daughter is 16 months and perfectly fine, but I still can't get over that pain of seeing my baby so helpless. I guess I will tell you my story.
I went to the doctors at 27 weeks because my feet were horribly swollen and so were my hands. I had to get my wedding ring cut off. I went to my mothers house and she told me to go right back to the doctors. Thank goodness I did because my blood pressure was at 200/94, I was seeing spots, and I had the worse headache. Long story short they admitted me, did some tests, and diagnosed me with preeclampsia.
Everyday in the hospital I was giving blood and vitals taken every hour. The worse, I'm pretty sure you ladies can relate, was the heart monitor. Oh my goodness...this was the source of all of my sadness. When I would move in my sleep I would wake up in fear because I couldn't hear it. By day three they had to do an emergency C-section because blood was not getting to my baby. The C-section was a breeze. The anti siezer meds were a monster.
What I was not prepared for was not having my baby with me. It was the most agonizing feeling I've ever felt. Seeing her with all those machines and tubes literally made me want to just die. Everytime I had to go home I felt like I was being gutted. I could NOT stop crying to the point I would lose my breath. I did not sleep for a week, and could not eat. The N.I.C.U was open 23 hours and I was there off and on about 18 of those.
After a 2 week stay my daughter was able to come home. However, I remained scared...I mean so filled with fear for my baby that I would stand over her crib, pray constantly, and wake up in a cold sweat and run to my babies side to make sure she was fine. My husband, family, and friends could not help me...I felt so scared!
My doctor said I had post traumatic stress syndrome coupled with postpartum depression. He prescribed me medication, but I refused to take it cause I wanted to be 100% alert for my daughter. I was so obsessed with her being okay that it took over my life. For the first 4 months I had reoccurring nightmares that my daughter was still in the N.I.C.U and had fallen behind her "bubble" she was in. The worse was I was told to bring her a balloon by one of the nurses, I woke up before I could give it to her. I cried the whole day over that dream. Sometimes I would still hear her heart monitors as i woke up.
Fast forward 16 months later and I still cry. A song will play on the radio and I will lose it (not infront of anyone, I just go somewhere alone to cry). I still have minor heart issues from the preeclampsia. I still wake up in fear and check my daughter to make sure she is breathing. Everytime I think about my pregnancy all I want to do is cry. My husband wants us to have another child, but I refuse.
Why does this still hurt? Why can't I look at my daughter and feel proud instead of sad? Why am I completely obsessed with her safety to the point I am scared to let any one other than my husband and mother watch her? When will the crying stop? Anyone else traumatized by there experience with preeclampsia? Does it ever get better.
Sorry about the rant everyone, this is just the first time I've ever spoken so openly about this pain. She is my whole life and I love her so so so much, but I just want to forget about her traumatic birth and focus on the pure joy she brings us and our future!