Where do I begin?

I'm not sure where to start-- I guess I can go back to finding out at 43 that I was pregnant with my second child..17 years apart from my first one ...i was excited...scared...nervous..starting all over again...knowing my oldest daughter was graduating from high school this year...she always wanted a brother but mainly a little sister...so I think I told her first that her wish had come true : ) she came with me for my initial ultrasound..and the technician of course at first thought it was her (at 17) coming in for the ultra sound..we both kind of smirked and said um no sorry its me : )...the poor guy was embarrassed but covered up great by telling me his mom was 44 when she had him..for the first 20 weeks..pregnancy went as usual..morning sickness..trudging thru work..I have to change tracks for a minute...about two weeks before my 20 week ultrasound...my dad called myself and sisters to let us know that the doctor wasnt giving him until the end of the week to live..so here I am ..none of my family knows that Im pregnant..hopping on an emergency plane ride from Rhode Island to Texas to California...to go spend time with my dad...of course I told my sisters once I got there and we all speaker phoned my mom to let her in on the secret : )..and told my dad once we got to his house...the next 7 days were probably the most stressful days of my life...but we spent time with my dad...I had to go back to work..so I flew back to RI leaving him very upset but still alive..Ok so now I go in for my 20 week ultrasound to find out we are having a little girl...we were very excited and so was everyone else...immediately we picked "E-V" (pronounced eevie) and discussed several hundred middle names..thought the ultrasound was uneventful until the phone call from my obgyn/midwife..who stated she was very concerned about my ultrasound-- she saw that the baby had a condition called "hydrops" and wanted me to go for bloodwork and then sent me on an emergency basis for a level 2 ultrasound at Women & Infants in Providence..well talk about knocking the wind out of your sail...here i was all set on having this baby..excited that I would be a new mom again....i think i cried for two weeks straight..the prognosis for the baby was very grim...they didn't expect her to live and kind of pushed the "you should terminate" option..but I saw her on the level two ultrasound..i heard her heartbeat...i couldnt give up on her..i pleaded to God to please save this baby..please don't take her away from me...Doctors explained..she will most likely have some sort of chromosome disorder..she could possibly be a vegetable..if she even survives...wow "if" she makes it..for two weeks -- I cried..I prayed..I worked from home--explained to everyone the options and/or the chances we had..of course "everyone supported whatever choice we made" but noone really offered a direction...but in my heart..i knew i couldnt and wouldnt give up...i declined further testing as far as amnio was concerned..I figured her body had enough to deal with containing fluid in her belly and her neck..some time moving to her head...in most cases of hydrops i believe the babies drown in their own fluid..i tried not to think of that as much as i could....i took care of myself the best that i could..tried to stay positive..prayed..ate all good foods and took liquid iron..we were sent for monthly level 2 ultrasounds to check how she was doing as far as growth went...one month she would be fine..the next they would say her femur is showing shorter then normal..one month the fluid would be gone the next it would be back..then the dr saw that she had a hole in her heart..I transferred my care completely to Providence around my 7 month as all doctors thought it was best she be delivered at the best hospital that could take care of her..should she need emergency surgery...during this whole time not one dr told me she was going to make it..imagine every day not knowing??? i cant even tell you how i felt...i wouldnt let anyone buy anything for her..worrying what would happen if she didnt make it..and I was faced looking at all this baby stuff...E-V decided at 8 months she would be breach and stayed in that position...between 8-9 months we went for non stress tests twice a week..also checking fluid level twice a week..i think i was shocked at my 8 month appt when the dr told me i was at high risk for having a still born baby..."are you kidding me??" ok so now we have made it this far..on a wing and a prayer..and we maybe have a stillborn baby..this has to be the worst mental torture ever...i kept thinking then why wouldnt they take her now? why take that chance? well we trudged along...E-V's due date was 6/11 and she was still breach...so they gave me 6/6 as the day they would take her..my sister flew in from Texas to be with us...I think the morning I had her..I had the biggest cheering section ever...I still didnt know what would happen with her until i actually saw her..my sister Shelly, my sister Candi, my bro in law Jimmy, my mom, my best friends Tracy & Ginger, my daughter Savana ..were all there waiting..praying...we all said a prayer before they took me in..all I could do was cry and beg God to spare her...I think one of the greatest moments of my life was when I was having my c-section and i heard them say ..got her...time: 11:15 am...weight 9 -3..and then i waited to hear her cry...when i heard her cry..her father and i both bawled our eyes out...i could see her she was alive and crying...they said well we need to take her ...run some tests etc..you are going to recovery...so off to the NICU she went...Jesse assured me he would go and stay with her as long as he could....her glucose was high..she had fluid in her lungs (from c section) they didnt "see signs of DS" but would run bloodwork to be sure...since all chromosome possibilities were discussed..for a moment i sighed relief...but what about the hole in her heart...?? she was in an open incubator for maybe an hour after birth..with daddy by her side...she was then moved to enclosed warming one..as her body temp had dropped..and mommy was shipped to another floor in the hospital..so she didnt feel bad being the only mommy without her baby in her room? well i guess they had logic somewhere..but i actually felt more alienated..and more worried as to why they would do that..E-V stayed in NICU for one week..her eating was slowly progressing... I spent as much time with her that I could..for the most part..not taking care of me..but being with her every second that I could..trying to get her to nurse and just letting her know i was there and how much I loved her...I stayed two nights at Ronald McDonald house as I refused to leave the area until she could come home..the thursday before fathers day they released her..and honestly didnt even tell me until about 3 pm..ok you can take her home now....here i am..no car..no car seat..scrambling to have someone drive an hour to come and get us..and imagine we have this little tiny VW Cabrio convertible that we bought not thinking we would be trying to put a car seat in the back...I think E-V's first year was a whirlwind of doctors and appointments all over the place..i kept thinking this is a full time job just coordinating these visits...so I tried to save my vacation days and use them to take her to the doctors..the day we left the hospital we had appts made with a pedi cardiologist, pediatrician, genetisist, DS specialist, audiologist..im sure im forgetting someone..luckily after a few cardio visits..he concluded that 2 out of the 3 holes E-V had when she was born had actually closed and the 3rd was very small..he said he would not need to see her until she was 4-- phew one down and how many left to go?? before I left the hospital the doctor who was following up on E-V confirmed her blood test had come back and she did have the extra 21 chromesome...i think i was so relieved that she actually was here and alive..anything else we certainly can deal with..all her first year checkups were great...at one point she had nystagmus very visibly..so that sent us on a whirlwind again to pedi eye surgeon who then sent us to a pedi neurologist...looking for possible fluid accumulation in her brain..that could be causing the condition...again..thank God poor thing was put thru a CT scan of her head..they injected die..etc..ugh..not a fun visit for sure ...but all tests came out fine...her nystagmus is pretty much not visible today..... I guess thats enough writing for today : ) I will continue with my next blog soon..