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remembering genevive loving lillian skip to main skip to sidebar thursday may 31 2012 i am still alive wow it has been nearly a year since i posted here i guess that is a great sign in my grief process i was super busy having my new baby i am happy to say i managed to carry him the longest of all my pregnancies 35weeks he was born november 8 and was a whopping 6lb 5oz and he is now a healthy 6 month old he is happy healthy and chunky and i totally adore him isn t he gorgeous genevive is ever on my mind of course but i haven t actively done anything for her lately i have been so busy with william however now that the weather is nicer i plan a trip to the cemetery to put down some new chipped marble and fix up her grave a bit having another baby cannot replace a lost baby but it sure does help with the sting i am so much happier than i have been in a while and i have noticed lots of little changes in my grief at 1 01 pm 1 comment wednesday august 24 2011 kind of a sad day today my wallet was so full of cards i couldn t zip it closed anymore so i had to clean it out one of the things that went was genevive s health insurance cards i have been carrying them in my wallet for two and a half years after her death it is odd the little things that we hold onto i admit i went back and forth until reason told me why in the world am i still carrying them around so they now live safely in her memory boxes with everything else and now i feel sad like another doorway is closed between her and i she is gone it is not like the cards are going to change that but sometimes i am angry life goes on maybe i should have just left them alone at 5 49 pm 1 comment tuesday august 9 2011 time keeps marching by thinking about genevive today so i thought i would come post things are going great around here the pregnancy is going well but i still miss my baby i think it could be the pregnancy but i have been thinking about her a lot and looking at her photos a lot she was so awesome it makes me angry that such terrible luck had to come by her lets go find some new photos to post it s the 9th so i will look for some 9 day old photos day 9 was an awesome day it was the only day i held both of my babies at the same time it was also sibling day so alexander came to see them as well genevive was sleepy most of the day sucking her thumb during a diaper change all fresh and changed and back to sleep i went back home for a while after this can t leave this one out though i have posted it before later in the evening taking a rest with mommy with big brother alex looking a little disappointed that we put her back in the isolette big brother alex checking her out and singing abcs to her at 8 23 am 1 comment monday april 18 2011 somewhat neglected blog i haven t posted in over a month that s terrible i am thinking of genevive of course in fact a bit more lately however we have had quite a lot going on we are overjoyed but this does open a whole new set of emotions the past month has been just holding my breath waiting for a heartbeat worrying about my diabetes worrying about twins again now so far my ultrasounds have only shown one baby but with the girls the same thing happened until the 4th ultrasound so i won t feel secure until the baby is a bit bigger even if it isn t twins the risk of a premature birth is still large both of my pregnancies were premature and the reason the twins were delivered early was caused by my diabetes which i still have of course i think i won t feel secure until this baby is home eating well and past the age that nec strikes even then there is always something that can happen i hate knowing that at 6 29 pm 4 comments older posts home subscribe to posts atom genevive s headstone fund headstone is done about me delekatala view my complete profile genevive 3lb 1oz 15 in long 16 days on earth lillian 1lb 13oz 13 5 in long home after 67 days in the nicu blog archive 2012 1 may 1 i am still alive 2011 8 august 2 april 1 march 1 january 4 2010 21 december 3 november 2 october 1 september 1 august 3 july 1 may 4 april 1 february 2 january 3 2009 57 december 7 november 2 october 4 september 7 august 1 july 2 june 5 may 8 april 14 march 7 awesome ways to remember our angels facebook badge jennifer cooney create your badge my favorite photo of genevive written the day after genevive s death two weeks ago i welcomed my twin baby girls into the world 3 months too early but perfect in every way we had a glorious two weeks i spent 8 hours or more at the hospital each day getting to know them and watching them each develop thier own little personalities pumping breastmilk doing skin to skin care talking to and nurturing them to help them grow big and healthy dreaming of taking them home and dressing them in matching outfits taking beautiful photos snuggling and rubbing noses 14 perfect days then on day 15 my worst nightmare came true the hospital called at 2am and told me my genevive was sick she needed surgery right away and i needed to come in just hours ago i had held her and played with her taken video of her and left her peacefully sleeping in her isolette when i got to the nicu they didn t even let me scrub in they grabbed me to a room and 4 people told me my baby had a severe form of necrotizing enterocolitis a disease that suddenly affects preemies and that her intestines were dieing i signed papers for her to be brought to surgery and asked to see my daughter my heart nearly broke in two my baby was not able to breath and had to be intubated all her veins were sticking out and she was sickly green her little belly was three times its normal size i was stunned a moment and just watched her then i put my hand on her little head and talked to her she looked at me and i could see that little sparkle in her eyes my baby girl was still there she knew my voice and i could tell i was a comfort for her i am so grateful for that moment i stayed with her for 15 minutes while they prepared the transportation isolette they had trouble keeping her stable and were just telling me they didn t think she was going to be able to handle the transport but my little fighter didn t take no for an answer her breathing improved and she was taken to hasbro for surgery it took 2 and a half hours the outcome was 75 percent of her intestines and bowel were removed she had two stomas in her belly and would need colostomy bags but had barely enough bowel to survive i felt instant relief she was very swollen but her color had gone back to pink eddy and i contacted a priest and had both genevive and lillian baptised the hospital had the most beautiful little gowns for us and it was a lovely ceremony then the priest said a special blessing over genevive women and infants nicu treated her wonderfully and worked very hard all day and night for her the team never left her bedside she was hanging in there but not doing well after 24 hours they decided they needed to do surgery again and figure out why she wasn t improving they cleared out and sterilized the bay to do the surgery right there because she wasn t strong enough to be moved after the surgery the doctor and surgeon came in and told us the outcome half of her remaining bowel was already dead the disease was progressing and she didn t have enough bowel left to survive she wasn t recovering well from the surgery and they didn t feel she would make the next 24 48 hours my heart stopped surely this must be a mistake this is my baby my big one the healthy one she was just a feeder and grower and was supposed to come home in a little more than a month they reserved the large family room for us and my sister called in immediate family we also called a photographer photos is how i deal with both joy and sorrow in my life i wanted beautiful photos of my daughters last moments they put up screens to block us from view and moved over the other babies so we would have room there was no more two people limit they said the rules don t apply anymore i can do whatever i want two hours i sat by her family arrived one by one and came to sit at her bedside talk to her and touch her and let her know we love her my mother hadn t arrived yet but genevive told us it was time her blood pressure was dropping quickly and we knew we had to move or we would lose her right there the nurse and doctors disconnected all her machines one by one i picked her up and we walked to the family room the doctor helping her breath with the oxygen bag and the nurse holding the pump with her pain medication once we got to the couch they removed the bag and got rid of the tube blocking her beautiful face her lip was curled from having the tube there for so long and she was very swollen from her surgeries but i didn t care she was my beautiful baby she had her last moments in my arms surrounded by people who love her once the doctor said her heart had stopped we were able to remove the last wire her pain medication for the first time i could hold my baby wire free i could move her wherever i wanted it was both joyful and sorrowful at the same time i spent about 6 hours with her holding and loving her i gave her her first and last bath we did handprints and footprints in clay her curly fluffy hair got even more fluffy after it was washed oh i loved it i could not stop touching her hair i wanted everyone to feel it it was the most magnificent softness everyone needed to touch it and remember during moments that i felt i could part with her for a second i let family hold her finally eddy and i were as ready to say goodbye as we were going to be we brought her back to her bed and left her for the last time the last thing i did was hold her sister i needed to make sure i could still smile and feel joy for my other baby it was like she knew we were hurting she put on a nice show for us smiling and pouting and doing kissy faces she only reached two pounds the day before this tiny thing that needs us so much i am so frightened for her and so greatful she is still with us pray for my lillian i couldn t bear to lose another baby i know people don t know what to say or do what a horrible shock this is what i need people to do is talk to me don t make me say my daughter is dead i don t want to tell people spread the news for me but once you know talk to me look at her photos leave messages remember how beautiful she was i feel a great need for people to know she existed and was special in only 16 days so few people got to see her in person and experience her wonder she was so advanced a newborn infant only three pounds but she was aware and looked right at you and smiled when you talked to her if you do it a few times she would stick her tongue out at you to copy you she always looked like she was smiling even when she wasn t but when she really smiled it would make your heart melt she never wanted to sleep she was so busy always looking around she didn t want to miss anything but rarely ever cried a perfectly happy baby she had silvery hair covering her body and on her head was soft curly hair like her daddy it was brown but slowly turning blonde and don t forget lillian is still here i don t want genevive forgotten but i don t want lillian smothered with her memory either thier birthday will be to celebrate lillian we can celebrate genevive on the anniversary of her death genevive mary cooney december 29 2008 january 14 2009 3 lb 1 oz 15 inches long getting ready to say goodbye