The video that I have worked on since I found out I was pregnant with Samuel, and yes, he is in there, too!! Please watch this, post it on your Facebook, your Twitter, WHATEVER!! Please help us spread the word!! WE MUST STOP NAIT!!!!!
Subscribe to:
Post Comments (Atom)
Thank you so much for putting this together! I just got diagnosed and you and the other women on the support group are amazing. This will be published on my son's blog this week! I am with you that we need to get the word out to prevent others from going through what we have!
ReplyDeleteHello my name is Christy. I was diagnosed with Poly Cystic Ovarian Syndrome (PCOS) at 18 and was told not to plan on having children since I rarely ever have a period and thus rarely ovulate. Fast-forward 12 years and now I am currently 19 weeks pregnant with our fourth child. Our first son Noah was born in August of 2005. We were so excited to find out we were pregnant; we both wanted kids but did not know it would ever happen. I had a normal low risk, picture perfect pregnancy, so to then give birth to a baby with a low heart rate= 60, cord wrapped around his neck, not breathing and petechiae all over was shocking. Noah had a platelet count of 10,000. Not much higher than your Jay. Poor Noah was put through a natural vaginal birth and 56 hours of labor because as my first child I thought this was what was best for him, and that since God had blessed me with a child I could go through any amount of pain to bring him into this world. After getting stuck at 4 cm for 8 hours and then 7 cm for 11 hours they started talking about c-section but I thought opting for a c-section was I not being the strong mommy that I should be. Clearly we had no idea we were expecting a NAIT baby, in fact we had never even heard of it. Luckily Noah quickly recovered from his traumatic birth and though the labor and delivery was nothing like I had imagined and even though I was not allowed to hold my baby until his second day of life I instantly knew God had been protecting us the whole time. And yet I still did not know at the time how truly blessed I was. It wasn't until Noah's second day of life that we were told about NAIT and it was not fully explained then just that our son needed an IVIG transfusion to help bring up his platelet count. Noah was released one week after his birth with oxygen and a Billy bed (He was severely jaundiced). He was off the oxygen in a few days and after some time under the lamps of his Billy bed and twice weekly foot pricks to check his bilirubin levels he was perfect. So beautiful and so Perfect!
ReplyDelete~Comment #1 of 5 ~ had to post multiple time because of length
We never researched NAIT further as I wasn't supposed to have kids and we were so happy with our healthy baby boy that we never knew we would have and then nearly lost that another baby was no where in our thoughts at the time. Nonetheless my OB suggested I go on a low dose of birth control to help with my sporadic bleeding since Noah's birth. Almost 7 months down the road and I was still feeling super run down. I was thinking I would be feeling more energized and back to my old self now that my bleeding was under control, Noah was sleeping through the night and I had quit breast-feeding. Turns out we were expecting again. I was in total disbelief! Ummm... Hello I don’t ovulate remember?? And you put me on birth control how is this possible?? I had asked my OB. After the initial shock wore off we were elated!! Then out of nowhere NAIT bore its ugly head again. We didn't know this would affect all our children. We didn't even know how tragic it could have been. It was then in the doctors office with my husband at my side, baby Noah in his arms and our 8 week old baby on the ultrasound screen that we finally were made aware how truly blessed we were. With all our Joy came great stress. "What if?" became my new favorite game. A game I played in my head constantly even though I hated it. What if Noah hadn't made it? What if my determination to have an all-natural birth meant I had killed my son? What if we had to experience great grief with this baby? Was there a price to be paid for Noah escaping unscathed against all odds? Were we doomed this time? The questions were endless. The negativity of my thoughts scared my husband. Why do you think this way he would tell me. Noah is fine look at him and this baby will be fine too. He was so certain I wanted to slap him. Are you not listening to what the specialist said? Were you not sitting right beside me as we madly researched NAIT on the Internet and discovered what a bleak future our baby could have? He reminded me of someone who had always been then before. God!! Had I so quickly forgotten all he had blessed me with?? I needed to come out of the hopeless place I had retreated to and talk to God again. We soon had our blood drawn and were told we were in the 50/50 league for NAIT. Please God don't let this baby have NAIT!! After the stress of an amniocentesis at 17 weeks and a two-week wait for test results we found out our baby boy Isaiah would not be affected and that I could go back to my regular OB for the remainder of my normal pregnancy. So 15 months after Noah was born Isaiah attempted to enter this world folded completely in half and stuck backwards. However it wasn't until I was pushing him out that this was discovered. So off for an emergency c-section we went.
ReplyDelete~#2 of 5
I immediately wanted to try for a girl as I thought the timer on my fertility clock was about up based off the PCOS diagnoses. The odds were excellent that we could have another perfectly healthy baby and with NAIT behind me (so I thought) I marched ahead with my two perfect baby boys in tow. I didn't go on any type of birth control this time. Crazy I know!! My OB wanted me to wait at least a year before trying again since I had two so close together and had a c-section. So we were careful but I didn't want to take any birth control hormones, they reacted poorly with my already out of control hormones from the PCOS and I wanted to give my body the best chance possible to ovulate yet again. When Isaiah was 10 months old we started trying again despite the fact that I never had another period after his birth. After many negative pregnancy tests and no sign of a period in sight it began to sink in that I would never get my girl. I was happy with my boys don't get me wrong and Oh so blessed to have them but I had got my hopes up after the birth of two healthy babies that maybe I could have another... my girl. I soon started some highly unpleasant medication to perhaps get my reproductive system rolling again and it worked. Soon after Isaiah's second birthday we learned we were expecting. 17 weeks and another amnio later we found out our baby girl would also be unaffected by NAIT. Bella was born VBAC (Vaginal birth after c-section) on October 23 of 2009. She was and is perfect.
ReplyDelete~#3of 5
My husband soon mentioned his intention to get a vasectomy and the news tore me apart, I cried for days. I knew we had been through a lot and that I should be satisfied. God had blessed me with more than I had even known I could have. I should be ready to close this chapter of the book and move on but I wasn't. I don’t know why but I hadn't prepared myself to be finished having babies while I was pregnant with Bella and up until that time I had always felt so happy pregnant. I LOVED being pregnant actually. Feeling life grow inside me had produced a part of me I didn't know existed and was not ready to say goodbye to. My sweet, wonderful, understanding, always supportive husband soon conceded and when Bella was 8 months old and starting to wean off breast feeding I went back on my reproductive medication despite all the nasty side effects. Soon after Bella's first birthday I got to see another tiny little peanut on the ultrasound. Now February 11th, we received the news that this baby boy would have NAIT. Now I can't stop thinking what have I done? I had to keep pushing. I couldn't just be done! Three healthy babies weren’t enough for you I can only imagine what some people think of me. Especially the ones that can't even have one baby or to those that have lost one. Not to say I regret getting pregnant, because I do want this baby boy Elijah more than anything. It's just that NAIT was so easy to forget about after Isaiah and Bella's births I almost thought it wouldn't happen to me.
ReplyDelete#4 of 5
This comment has been removed by the author.
ReplyDeleteWell lots of tears and sleepless nights later we are fighting NAIT. I had my first IVIG treatment Sunday. It took hours to get started as I am blessed with awful veins, so they may place a picc line (a permanent IV of sorts) so it doesn't take several sticks to get it going every Sunday. I got a headache near the end of the infusion and my arm is super sore but I am otherwise feeling pretty good. Elijah sounded great on the monitor and I am looking forward to our ultrasound on Wednesday. After crying the whole time I read your blog and watched your video (Which I posted on my Face book page) I can't thank you enough for taking the time to share your story. It is exactly what I needed to come across and I am sure God knew that. I am hoping you have time to answer a few questions. I noticed after your first IVIG you stated that you could not take Tylenol for a while after the treatment was over. Any reason? I came straight home after treatment yesterday and popped two. My nurse said that was fine. I just want to make sure there is nothing I should be avoiding after treatment; also I see that you had treatment twice a week. They currently have me on 1g once weekly. What was your dosage? My doctors said that they would give me a higher dosage only if my first son had a bleed. Why we have to wait for something bad to happen I don't know but I would love some help justifying another treatment a week or higher dosage, whatever you think. They said they don't do twice-weekly infusions that they would just give more at one time?? I would so appreciate any information. Thank You, Christy Ramirez Ramirezboys2@Q.com
ReplyDelete